Guest Blog by Jennifer Pastiloff

Today a post by my dear friend, Jennifer Pastiloff, who has spent the last three days lounging with Ronan. Read on…

Which Brings Me To You by Jen Pastiloff, originally published on the Manifestation Yoga Blog.

That which brings me to you. Here I am in Santa Fe, sitting on a love seat, and next to me, a sweet baby is propped up on pillows, as I write, drool sliding down his chin, eyelids heavy and soft, purring like a cat every so often. A sweet dying baby.

Which brings me to you. It caught my eye, that book on the shelf in the office converted into bedroom, equipped with an air mattress for me on the floor.

Tay Sachs is that which brings me to you.  A dying baby is that which brings me to you, Santa Fe.

Ronan with his mom’s book Poster Child across his chest

It is cold here. Colder than I expected. There is an energetic shift within my bones that I recall from many autumns in New Jersey and New York. As if the person within the person of me comes out and takes over during this time. The person wears my clothes and looks like me, but she thinks and feels a little differently. She is a little more somber and introspective, melancholy even. The light patterns change, the air demands attention and the sky often meets you at the front door as you open it for a moment of season. They get season here, whereas L.A. lacks that. I appreciate the season as it demarcates the eras of my life. Without them, my life becomes one long weekend. Such is life in L.A.

The season here, however, is the same it has been since Ronan’s diagnosis.  I can tell the weather in their little adobe house has been winter dark for the last 9 months. December dark. Losing light at 4:30 pm and dead trees kind of dark.

Ronan is peaceful. He doesn’t know what is happening to him. It is hard for me to conceptualize that soon, could be months, could be a year or more, he won’t be anymore.

Right now he sits next to me in a plaid shirt, sitting in what looks like a lotus position, and just is.

I sound like such a yoga teacher when I say that. He just is. He doesn’t fuss except when he is very tired or his head flops over to one side, which it does quite often. His presence is comforting, knowing he is sitting there next to me, like a fat baby Buddha making little hiccuppy noises every few minutes.He’s here now. In time, a short time, he won’t be. The mathematics of this equation refuses to register in my head. He’s here now and everything feels good on this brown couch. The rise and fall of his chest is a reminder of what is constant in the world, of kisses and baby things and deep full breaths of mountain air after you’ve been trapped in a dirty city way too long. He is so peaceful it is hard to imagine that with his death will come such an uprising, such pain, such a loss, that the word peace will have long left the English vocabulary.

The word ‘peace’ will be come extinct along with ‘fairness’.

It is colder than I imagined here. We went out to breakfast today with Ronan to Mavens. Emily, with her one leg, was one of the most dedicated yogis ( and spin class addicts) I had ever met, and right away I knew I would not only be inspired by her but would be her friend. It was fast like that. Love at first sight, if you will. Plus, she is an incredible writer and I am in awe of her mind.

At Mavens, I had a traditional Mexican breakfast of sorts and while Emily went to the restroom I snapped 15 pictures of Ronan with my iPhone. I pretend that if I take a lot of pictures and write about him enough that he won’t ever stop existing. A friend of mine emailed me yesterday and told me to “steal away a little of their pain.”

I wish I could.

Ronan gets startled easily. I crack my knuckles, a nasty non-yogic habit, if you ask me, a dirty disgusting habit which I have done since my dad died when I was 8 in an effort to be like him. I crack my knuckles and he startles. He may be dying but his intuition is still spot on. He cries when he is tired or hungry or annoyed or I crack my knuckles. I should stop doing it in honor of him.

His face is stunningly beautiful. So much so, that yesterday at a coffee shop in Santa Fe with Emily, I told her that maybe he was an angel. Corny. I know. The face of an angel is what stares back at you when you look at this baby. No judgement, no fear, no lines of pain and a life lived, just beauty and quiet and contentment.

We went into town while he was napping and looked at the chile shops and turquoise. I bought chile fudge and a watermelon juice and some dragon leggings. They have literal dragons breathing fire on them. It felt apropos.

Nothing makes sense so why shouldn’t I buy dragon tights and a watermelon juice on a freezing day?

I used to think perfect didn’t exist. Not the word, not even the idea of something so without faults that there was no room for growth or improvement. It does exist! He is sitting next to me. Whining just a little, so I know he is here. He won’t improve or grow. This moment is who he will be forever in my mind. He is perfect.

I felt embarrassed after my meltdown at the airport when they wouldn’t let me on my flight and I threw a fit. I went into a rage. Now as I sit here on this cold Santa Fe day, as Emily is teaching her university freshman writing class, and Rick, her husband is asleep, I realize that I was right to fly into a rage. I get to have this moment on this couch, in this room, all by myself with a perfect purring baby. I was robbed many moments when I was rerouted to Dallas. I want those moments back.

Emily and Rick’s whole life is going to be filled with wanting those moments back. With wishing to never have gotten rerouted. I know I threw into that rage for them. I was indeed trying to take just a little of their pain away.

I sit here with Ronan as he snores lightly. It is a calming sound, one I could listen to forever, knowing Ronan was right here.

Rick comes and takes him to feed him his lunch. Ronan smiles slightly, but it’s there. A smile. He is still here. He can purr and cry and smile every so often. The science fiction like reality of what is happening to him is still far enough way, locked outside in the October New Mexico sky, pummeled to smithereens by his ability to still smile at his daddy.

That which brings me to you is death, yes.

But that which brings me to you is also your life, sweet Ronan. It is your presence in the world, which right now, at this moment, is as spectacular as a million meteor showers as you lie on your back outside and watch the night explode into light.


I urge you to follow Emily Rapp’s blog ” Little Seal” and fall madly in love with her, her writing, and of course, Ronan. I visualize it becoming a great book which helps other people who are going through such devastating loss.

6 responses to “Guest Blog by Jennifer Pastiloff

  1. Thank you for your touching post, Jennifer. I’m guessing you did “steal away a little of their pain.”

  2. Thank you for the photos of Ronan. He’s really an incredible beauty. I’ve never met him in person but it always makes my day when I see his face on my screen.

  3. So beautiful Jen….so touching….so you. If only this were a work of fiction…if only. Thanks for giving us a few moments with precious Ronan. Kiss him for me today and tell him that he is loved.

  4. I’m crying in Starbucks. I’ve followed this blog ever since you, Jennifer, first introduced it to me however many months ago. If only through empathy we could steal others’ pain. That’s the idea, I think. That’s what our bodies want to do, think we can do, when we sit crying in front of strangers for other strangers across the globe. I remember reading an anthropology book in college about Bedouin women who when someone dies they spend a month in a tent and the women take turns just to be there in this ritual act of collective crying. Kind of a wailing singing. It’s strange that empathetic grieving in this manner serves no discernible purpose yet we are compelled with a great force to do it nonetheless. Cry our bodies must. I am reminded of my dream last night in which I lay with my dying mom (my mom is not dying at least to my knowledge) and I whispered into her ear that I would be right behind her. That we think this time that separates her death from mine 30 years, 40, 10, 20, 5? is of great import but in that moment whispering to her I was confident that it was nothing. Just a flash of light. And there we go. This was not sad to me then. It was reassuring. We think we know so much but we know nothing. I’ve never believed in an “after life” per se. But I also do not foreclose the possibility that there is joy, peace, contentment–somehow–beyond this life we know. Lately I’ve felt this jolt of hope that- maybe just maybe – we would laugh at ourselves for all the worry and fear we put into thinking about what happens *next* and maybe we get *there* and think–oh, yes, THIS, home. I have a little mantra for myself –have the COURAGE to hope for that which you have no *reason* to expect. This may sound weak but I think it is strong. I certainly HOPE that we truly are part of something so much greater such that we would not mind this pain now if we had the clarity of vision we will one day obtain. Here’s a toast- in tears -to this possibility.

  5. I often think even now how hard it was for friends and family to day ‘dying baby’; in spite they loved my Ane with all their hearts. Those moments are precious, and what a great post. Both of you.

    I wanted to write a post yesterday about hearing the NPR radio program, what it stirred in me, and link back to you. I believe one of our missions on this earth is to educate people. I’m often torn on exactly what, but my connections are getting out there.

    Peace to the both of you, from a mother who is still searching for hers…

  6. We know so little…we know so little about the life, we know so little about the death….we know so little about the tiny little angels that sometimes descend to our plane to visit, giving us enormous teachings just by observing us so peacefully and wisely… because they already are the high masters, their teachings are beyond our comprehension….
    Sending you love ♥

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